Did you choose active surveillance? Why was it a good choice?

Posted by arizobound @arizobound, Dec 27, 2024

Biopsy showed 3 + 4 MRI showed pirad 2 bone scan CAT scan no metastasism nothing found. psma pet scan radiologists said nothing found. but oncologist says he saw a very small spot. Only concern was half of the cores showed 3 + 4 out of 12 but he said it does not show the percentage of four?? Not sure I understand this part. Told me I could do active surveillance or cyber knife or brachytherapy. I think I am going to go with active surveillance my Medicare plan I can change next year to an advantage will cover more of the cost I have original Medicare now. Can I get some opinions on active surveillance being a good choice? Thank you in advance

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@ozelli

Personally I would have no problem waiting if PSA and decipher is low and nothing visible on MRI (assuming latest machine). Quarterly psa tests and a yearly MRI is probably what I would do and in fact did do something similar.

Your PET scan is also clear, right? There are a lot of treatment choices out there and the longer you can wait, the more there will be.

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Yes my pet scan psma PET scan radiologist who read it didn't see anything my oncologist said he saw a slightly small area the the radiologist might have missed. He showed it to me it was very small . But the radiologist that read the scan said it was negative nothing found. My oncologist I saw him yesterday first visit but he's really has 30 years with strictly prostate cancer said he wasn't to concerned about it that as long as I did some kind of treatment later. We talked about CyberKnife and brachytherapy At the end of the year.

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@survivor5280

Biopsies are only partial results. They may hit all cancerous spots during it or they may miss a bad spot somewhere. You might ask for a Decipher test, which analyzes the tissue samples to see if it's worse than the biopsy is revealing.

I was also 3+4 and recommended for active surveillance util the Decipher said it was 0.68 - meaning high risk, then I immediately went from active surveillance to treatment. And I had fewer 3+4 cores than you.

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My decipher score is score 0.41. thank you for your input let me know if you can think of anything else in your opinion.

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@jeffmarc

Considering you already have a Gleason 3+4 a 6 month PSA test may not be appropriate. You should probably get three months tests because with half your cores positive it could grow a lot faster than you would hope.

Urologists are not really the specialist in prostate cancer, They do the surgeries and the Initial diagnosis, but it is difficult to completely trust them for advice. If you want to a center of excellence where they have multiple doctors reviewing your situation, you might get different answers. Finding a Genito urinary oncologist, the ones that specialize in prostate cancer, might tell you recommendations that are quite different. One of the doctors in a recent Ancan.org Meeting talked about how his urologist told him he was just fine, as his PSA was rising. By the time the doctor finally had him get a biopsy his cancer had spread a lot. You may not have a lot of 4’a but you have a lot of cores with cancer, That is a factor that should be considered.

You could have one of those other treatments I mentioned, you might want to look into that.

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That was there only concern was the amount of cores. That was one urologist and two oncologist told me. I got quite a few opinions actually yesterday I was at the oncologist. He has 30 years experience in prostate cancer he said that I should eventually get it treated like no later than end of year. but he was comfortable with me waiting for a while. The amount of cores the only negative he said.you're correct but he also said everything else all the scans decipher and PSA are all low. My main problem that I don't understand is how can every scan be negative including decipher 0.41 which is low but they found it on a biopsy. To me the concerning part is why can't four different types of scams not pick up anything. They're supposedly MRI pet scanner 90 something percent accurate if we think one of these will pick it up something that there is something there to pick up that was of any size??

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@arizobound

That was there only concern was the amount of cores. That was one urologist and two oncologist told me. I got quite a few opinions actually yesterday I was at the oncologist. He has 30 years experience in prostate cancer he said that I should eventually get it treated like no later than end of year. but he was comfortable with me waiting for a while. The amount of cores the only negative he said.you're correct but he also said everything else all the scans decipher and PSA are all low. My main problem that I don't understand is how can every scan be negative including decipher 0.41 which is low but they found it on a biopsy. To me the concerning part is why can't four different types of scams not pick up anything. They're supposedly MRI pet scanner 90 something percent accurate if we think one of these will pick it up something that there is something there to pick up that was of any size??

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For background: I'm 68 y/o and have been on active surveillance (AS) for the last 14 months.

I received my initial mpMRI and targeted TRUS biopsy in October 2023. The mpMRI showed 3 PIRADS lesions, one 5, one 4 and one 3. The biopsy took 21 cores from 15 areas and 7 of the 15 were positive. Two of the PIRADS lesions were low volume (5-10%) 3+3 and one was benign. They also found three additional 3+3 cores (5-10%) and two 3+4 cores (10-20%) in the "random" portion of the biopsy. My Decipher score was 0.22.

One of the main reasons I opted for AS was because my Decipher GRID Clinical Genomic Model (see attachment) dropped my clinical "Favorable Intermediate Risk" stage to “Low Risk" (based on the clinical/genomic model) and recommended AS. My post-biopsy PSA's (I get them every three months) have averaged ~20% lower than my pre-biopsy PSA.

I had my yearly follow-up mpMRI in October 2024 and it showed largest lesion shrinkage and the other two lesions were not visible. The so-called "T2 & DWI/ADC" lesion signals were also reduced from “moderate” to “mild”. In my latest December appointment my urologist said I can postpone getting another biopsy. I continue to closely monitor my situation.

The reason I'm going into all this detail is that each of the things I mentioned above are important pieces of information for men with a 3+4 PCa diagnosis who are considering AS.

You should definitely find out what your cancer volume percentages were in all your biopsy cores AND the percentage of type 4 Gleason (in your 3+4 cores). This is very important information, especially when multiple cores are involved.

If your radiologist did not provide cancer volume percentage information you should seek a second opinion of your biopsy pathology to get that information.

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@arizobound

That was there only concern was the amount of cores. That was one urologist and two oncologist told me. I got quite a few opinions actually yesterday I was at the oncologist. He has 30 years experience in prostate cancer he said that I should eventually get it treated like no later than end of year. but he was comfortable with me waiting for a while. The amount of cores the only negative he said.you're correct but he also said everything else all the scans decipher and PSA are all low. My main problem that I don't understand is how can every scan be negative including decipher 0.41 which is low but they found it on a biopsy. To me the concerning part is why can't four different types of scams not pick up anything. They're supposedly MRI pet scanner 90 something percent accurate if we think one of these will pick it up something that there is something there to pick up that was of any size??

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If your cancer is completely inside the prostate, then all the other tests will find nothing, Except a PSMA pet Test would which find it in the prostate, They just didn’t mention that since that was a known problem, If you ask them, they could tell you that the Prostate did light up on the PSMA pet test.

There is a difference between a medical oncologist and a Genito urinary oncologist. Do you know if your oncologist is a GU oncologist?

If you Decide to do nothing get quarterly PSA tests

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@jeffmarc

If your cancer is completely inside the prostate, then all the other tests will find nothing, Except a PSMA pet Test would which find it in the prostate, They just didn’t mention that since that was a known problem, If you ask them, they could tell you that the Prostate did light up on the PSMA pet test.

There is a difference between a medical oncologist and a Genito urinary oncologist. Do you know if your oncologist is a GU oncologist?

If you Decide to do nothing get quarterly PSA tests

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I'm not sure but this is what it says on his site. He is a is a board-certified radiation oncologist. He joined SSM Health Cancer Care in 2010 and is one of the physicians on staff at CyberKnife. has more than 30 years of experience in patient care with special interests in breast cancer and prostate cancer. He has more than 50 publications, both in peer previewed. I picked him because he was experienced I had spoken to another oncologist young guy I didn't trust. Would love to hear your opinion what you think thank you.

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@arizobound

I'm not sure but this is what it says on his site. He is a is a board-certified radiation oncologist. He joined SSM Health Cancer Care in 2010 and is one of the physicians on staff at CyberKnife. has more than 30 years of experience in patient care with special interests in breast cancer and prostate cancer. He has more than 50 publications, both in peer previewed. I picked him because he was experienced I had spoken to another oncologist young guy I didn't trust. Would love to hear your opinion what you think thank you.

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If you are trying to get answers on what to do about prostate cancer, your best bet is to go to a Genito urinary oncologist. Radiation oncologists Have information about treatments Using radiation. A GU oncologist has Information about just about all different types of treatments, not just radiation related treatments.

You Might want to go to YouTube and listen to the PCRI conferences. Mark Scholz is a speaker at those talks and will give you an incredible amount of information about treatments. You can actually go to him in Marina Del Mar, California, He doesn’t take insurance and charges about $400 for an evaluation. Listen to some of his talks, and you will see why You might consider getting his opinion.

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@jeffmarc

If you are trying to get answers on what to do about prostate cancer, your best bet is to go to a Genito urinary oncologist. Radiation oncologists Have information about treatments Using radiation. A GU oncologist has Information about just about all different types of treatments, not just radiation related treatments.

You Might want to go to YouTube and listen to the PCRI conferences. Mark Scholz is a speaker at those talks and will give you an incredible amount of information about treatments. You can actually go to him in Marina Del Mar, California, He doesn’t take insurance and charges about $400 for an evaluation. Listen to some of his talks, and you will see why You might consider getting his opinion.

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Yes I know who you're talking about I had listened to many of his YouTube videos I have done a ton of research I only found out maybe 3 months ago about all this but I have spent many many days I felt like I knew more than one of my oncologist I talked to that's why I switched to someone who had quite a bit of experience the other person was young. I guess I'm looking for some type of reassurance but urologist and oncologist both said should be fine to go on as for a while. Of course I asked if I could I didn't suggest it the first suggestion was treatment of course. then when they knew I did my homework and asked if I could they said that they thought it would be okay. thank you.

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@survivor5280

Biopsies are only partial results. They may hit all cancerous spots during it or they may miss a bad spot somewhere. You might ask for a Decipher test, which analyzes the tissue samples to see if it's worse than the biopsy is revealing.

I was also 3+4 and recommended for active surveillance util the Decipher said it was 0.68 - meaning high risk, then I immediately went from active surveillance to treatment. And I had fewer 3+4 cores than you.

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@arizobound @survivor5280
@arizobound, Good information from @survivor5280

A biopsy report cannot show that cancer is not present in other areas than the biopsies locations.

A Decipher test only test the tissues submitted that have already been taken and then does a genetic test to determine risk of those biopsies.

My pathlogy report 3+4=7 was rated as intermediate risk. My Decipher came back low risk.

I and many other you will see recommend Decipher as is more specific and better determination of biopsies than pathologist reading.

When I had my radiation treatment I asked the R/O if doing only the locations identified by pathology or all prostate. I was told all prostate. We want to make sure we get all the cancer cells and said dealing with cancer at celluar level and don't want to miss anything not seen by MRIs and biopsies.

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@bjroc

Once you have a fair amount of 4, think about Tulsa Pro, as 4 won't go away and it might stay dormant or might not.

My experience
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/
--------
Tulsa where to get
https://tulsaprocedure.com/find-a-tulsa-pro-center/
https://tulsaprocedure.com/
If wondering about Tulsa Pro from a science point of view, here is a basic Tulsa science overview article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9231661/
Conclusions:
“As an alternative to conventional treatments, TULSA is safe and effective for prostate tissue ablation in men with primary PCa. There is also evidence that TULSA delivers effective relief of urinary symptoms while treating PCa in a single, low-morbidity procedure. The likelihood of freedom from additional treatment or potency preservation is associated with the planned ablation fraction.”

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I agree that Tulsa Pro may be a good option for you. I had it done at Mayo Rochester in July. PSA went from 8.6 to 0.68 at 3 months. Original Medicare and my supplement BCBS covered all but $6. My story:
https://connect.mayoclinic.org/discussion/tulsa-pro-experience-mayo-clinic-mn-july-2024/

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